When I first started writing a blog a friend told me that you laid yourself wide open to everyone with a on line computer, which in this day and age must be a hell of a lot of people worldwide. So with this in mind there are no names used, other then one and my own.
So how does one become frustrated by the actions of other people, people who you tend to regard as friends and confidants. People you have known and cared for over a number of years, but when the boot is on the other foot !! Hello is anybody out there.
Six years ago, I was asked to start a self help support group for people suffering with a Lung Disease, having being diagnosed some years previously with a condition known as C.O.P.D. (Chronic Obstructive Pulmonary Disease) knowing little or nothing about lung diseases at the time. Over the years I have acquired a reasonable amount of knowledge about the various forms illnesses that directly affect the lungs of which there are many. After numerous admissions into hospital between 1999 and 2002, I think it would be fair to say that I had become reasonably well known to a number of the medical staff at the local hospital. So much so that in November 2001 I was approached along with others, by Senior Respiratory Specialist Nursing Sister Michaela Bowden to look into the possibilities of starting a self help support group, and in April of 2002 we officially lunched the group.
At this point I should acknowledge the support and backing received from the entire Thoracic Team at the Bolton Royal. From day one to the present day, the Consultants and Specialist nurses have been truly wonderful and have supported the group in every possible way, allowing for the fact that their occupations are demanding on both their time and energies.
Not much to get frustrated at so far you may think, and you would be right, apart from the fact that everyone gets to clock off, I don’t. I get phone calls morning, noon and night from members of the group, and sometimes from people I have never heard of, but they have heard of us or more to the point ME. Asking for advice on various complaints, and some that even the doctors have not heard of. I’ve had calls threatening to commit suicide, (the last one being Sunday the 25th) because they can no longer cope with their illness. I constantly get asked for tips or suggestions of how to handle specific breathing difficulties. Whilst I am able to pass on tips that are known to work well for some people they don’t always work for everyone. So my advice is and always will be “If in doubt call your own Doctor”.
Over the last five years I have given talks to both medical groups and patient groups which have been well received. I never pull my punches when it comes down to long term prognosis, If a Doctor tells a patient that there is NO cure for Lung Disease such as Emphysema or Bronchiectasis. Why do I still get constantly asked if I know of a cure, which warrants one of two answers, if in a open seminar or general meeting I say “There is no known cure, but your illness can be managed with the use of correct medication. But don’t take my word for it ask the experts” or if it’s a telephone call, I try to always be polite but often make the point “If there was a cure, can you tell me why I’m sitting here with a oxygen pipe stuck up my nose”.
So to get to the reason I am totally frustrated at times.
I have been told on many occasions and I quote “You’re a bloody marvel the way you cope and handle your illness” Well surprise, surprise I’ll let you into a little secret. Have you heard about the beautiful and graceful swan gliding serenely across the lake, whilst below the water its feet are paddling fifty to the dozen just to stay afloat. Well I guess that’s me, all calm up front whilst paddling like hell below the surface.
A fortnight ago I was at the hospital not for my chest problems, which makes a change. But four years ago whilst in hospital one of the registrars noticed a small lump to the right side of my nose, and referred me to the E.N.T. unit (Ear, Nose and Throat) who promptly diagnosed what is known as a Rodent Ulcer, which of course prompts the question what’s that ? “Skin Cancer” Oh Sh1 t what does that mean and can it be cured ? Yes normally we would just cut it out, but with your chest we would prefer to use radiotherapy to get rid of it. So the following month I’m in Christies Hospital having my nose blasted with the appropriate treatment, and six month later they carry out a biopsy and give me the all clear.
You know what’s coming, Yes It’s back, but on my cheek just in front of my left ear ( payback time for all those years in Africa, Sun block what’s sun block) So I have to have it dug out this month ah well “Cell A Vie” The following two days were spent taking gifts to the house bound members of our group, nothing fantastic, a diary and a set of 6 hand made greeting cards and Christmas card on behalf of the group. On Thursday we had our regular meeting, I explained to the group that I might not be at the December meeting and the possible reason why. Yesterday was our Christmas Meal and outing to Oswaldtwistle Mills for some Christmas shopping therapy. When the coach arrived it was one of those very high continental coaches. One look at the nine steps to negotiate to get on told me it was a none starter, so it was back to the car to drive myself and Joyce to the venue. The meal was excellent but by 3.00pm I had had enough so we returned early after letting a couple of members know, not that it matted as we were not on the coach anyway.
So why is this voluntary position so frustrating ?
Calls to thank us for the gifts.............................To date......................................Nil.
Calls to see if I’m OK after the meeting............ To date Nil.
Calls to see if we got back yesterday OK..........To date.....................................Nil.
Call since Friday teatime for advice...................To date.....................................Four.
I don’t want praise, I certainly don’t want sympathy, a little more help in running the group would be appreciated. But I don’t think I would be out of order to expect the occasional call to ask “Are you OK old son” Or is that to much to expect ? Or is it that I’ve turned into a grumpy old man? I never used to be a whinge, honest I wasn’t.
I’ll finish with a joke for you :-
A 85 year old Great Grandmother dies and arrives a the gates of heaven to be greeted by the Angel Gabriele. “Hello love, just take a chair for a few minutes whilst I take this other lady through to meet the boss” “ Yes ok” says the 85 year old. A few minutes pass and Gabriele re-emerges. “That previous lady is just finishing off with the boss shouldn’t be too long now” says Gabriele. “Yes that’s fine I’m rather excited “ say’s the 85 year old. All of a sudden there is a almighty and prolonged scream. “What the hell was that” enquires the 85 year old. “Oh it’s OK don’t worry it’s just the previous lady having two holes in her back drilled to hang her wings on” say Gabriele. “ Oh I not to sure about that, it sounds very painful” says the 85 year old. “Oh it only hurts for a short while, but it’s worth it in the end” say’s Gabriele.
Just then there is an even louder and longer scream. “What the hell was that” asks the 85 year old. “Don’t worry yourself one little bit, it’s just that they need to drill a hole in her skull to fit the halo into” Say’s the Angel Gabriele. “Sod that for a game, I’m not having that get transferred to the other place” say’s the 85 year old. “Oh no you don’t want to go there, they will do all sorts of nasty thing to you including rape and buggering you” say’s Gabriele. “That’s no problem I’ve already got the holes for that” Says the 85 year old
